Spinal Fusion

After a few failed scheduled attempts for Alex's spinal fusion, it finally happened on February 20th.  I was a nervous wreck leading up to the surgery but she was becoming so incredibly uncomfortable in most positions and she was living on Motrin so it was beyond clear we couldn't put it off any longer even if we wanted to.

We had to be at the hospital at 6am and from the time we woke her up at 4am she was incredibly happy.  I had been talking to Alex for weeks about the surgery and kept asking her if she was ready to have her back feel better and I always got the eyebrows up, her way of saying yes. 

She was super happy and very cooperative for her pre-op nurse.

They blew up an air like mattress to put on top of her to control her temperature and she thought it was the funniest thing.

My parents were able to come in with us and wait in the pre-op room until it was time for her to go. Usually Papa gets all the loving so it was nice that Me-Me got some of the attention for a change :) 

One last hug from Daddy and it was time to go.

I tried really hard to keep it together, but when the surgeon and anesthesiologist came in to talk about the procedure and what the possible complications could be I couldn't hold in my tears anymore.  We've been anticipating this for years, but the reality of it all was completely overwhelming for me and all of the built up emotions just started to flow.   The nurse that was going to be in the OR with her the whole time gave me a hug and told me that she was a mom and for the next 8-10 hours Alex was going to be her daughter and she would take care of her just like she was her own.  In some strange way that was really comforting. 

When it was time to go she was still as happy as she could be and it looked like she was waving bye to us.  

The total surgery time was 8 hours.  They called me every hour to let me know how she was doing and that was incredibly helpful.

While we were waiting for them to get her settled into her room in the PICU we could hear her crying from the waiting area.  We weren't allowed in yet and listening to her crying and not being able to comfort her was hard.

They were giving her enough narcotics to put down a horse and she wasn't able to get comfortable.  After a few hours they seemed to have found the right cocktail and she slept for a few hours. 

The first two days were a little bit of a juggling act trying to keep her comfortable and keep her stats OK at the same time. The drugs were making her blood pressure too low but the pain was making her heart rate too high.  For two days her labs came back low and she needed repletion's of calcium, potassium, magnesium and fostfate.  

On the 2nd day physical therapy came to try and get her upright but they only got the bed to 25 degrees, 35 degrees was too much and her blood pressure began to drop so they didn't try to go any further.   

On day 3 they were able to sit her up on the edge of her bed and then transferred her to her wheel chair.  Her fusion was from the top of her thoracic vertebrae (T2) to her fifth lumbar spine vertebrae (L5) so watching them move her had me a nervous wreck again. 

 

Once she was in her chair she was high as a kite and pretty much out of it - but she was sitting in her wheel chair, which usually means we are going somewhere, so she started waving bye-bye!  

For the first few days she stayed pretty well medicated but we were able to get her up in her chair for an hour each day.  Aaron and I had to do all the moving from day 3 on so we would be comfortable transferring her when we got home.  If I didn't think we were a good team before all of this I have no doubt now!

I think it was day 4 that we moved from PICU to the step-down unit.  Thank goodness for her physical therapist and she made sure it was a private room!

After a few days we were able to get her up for longer and we were able to take her out to the playground on the pediatric floor.  She wasn't thrilled to be up and outside, but it was a nice day and it was nice to be outside and getting some fresh air.  

Clearly she was not amused with her dad :) 

I had posted this picture on Facebook  after we walked around the floor for a while and said something like you know you're the parent of a medically fragile child when you walk around the unit and say..."and you've been in that room, and you've been in that room, and you've been in that room, and you've been...."  True story.  

When this is your bed for a week, you need to find the humor where you can ;) 

After a week - we finally got a smile!  It didn't last long, but it was much needed!

On the day of our discharge I was watching her sleep and it occurred to me - wow, her back looks so straight!

Unfortunately Alex's bladder hadn't worked since the surgery and we had to come home from the hospital with a Foley bag.  She had 3 Foley's while she was there and 15 in and out catheters and she had a ton of sediment or "debris" every time and was not able to urinate on her own.  

After we were home for a few days, sparing all of the details, we were having a lot of problems with her Foley and we were back and forth to the urologist.  On one of those visits I had my phone out checking a message when I looked up and saw Alex smiling at Aaron who was having a conversation with her about  peeing :)   Sometimes I capture pictures of Aaron with Alex or Zach that literally make me fall in love with him all over again....case in point....

On a subsequent visit we had another ultrasound and it showed some changes in her kidneys and at this point we think her urology problems are stemming from her kidneys, but we have another follow-up and ultrasound in a few weeks to confirm some things.  The GREAT news is that the Foley is out and she's peeing on her own!  For a brief point in time we were fearful this could be a permanent thing so we're obviously over the moon for her progress!

For the last 3+ weeks Alex has had the same bandage on since she came out of the OR.  The bandage is obviously long and we've been anxiously waiting to see how she's healing.  She's had some positioning restrictions and Aaron and I have been having to do a double lift with her.  I keep saying it's been like having a newborn in the house between waking up for medications or position changes every 3 hours...it's been pretty tiring.  Additionally, her seizures were at bay with all of the medications that she was on but now that we are home and weaning that has changed.  Two nights ago she had eight seizures during the night and got zero sleep.  Yesterday she was trying to nap and every time she would finally fall asleep she would have a seizure.   Because she has grand mal seizures we were worried about how convulsing would affect her surgical site.     

Today was the big day - we got the bandages off.  I will say right off the bat that I think I'm really good at a lot of things when it comes to taking care of Alex, but wound care....that's all Aaron - NOT my strong suit....AT A.L.L. so I was pretty anxious about how things were going to look....overall....it wasn't as bad as I thought....

I will say, I think my girl is really one tough cookie. 

Back in December Alex's curve was at 60 degrees - today, she was at 22 degrees!!  Surgery was a success!!

Next week we are back to physical therapy, I can't wait to see what's in store for her now!